31 May 2013

The most hurtful thing about having Ichthyosis is seeing the way others react to it. If clumsy, horrible words aren't falling out of their mouths, their expressions are saying exactly what they're thinking. And online, they dare their peers to google Ichthyosis for the shock factor and ridicule. And I apologise for the hurt these screenshots may cause.

I hate the sensationalism and exploitation surrounding this condition. And that is why I tell my story. And through curating the Ichthyosis Awareness Month blog project, I was able to educate not exploit.

The Ichthyosis Awareness Month blog project has meant that when you search for Ichthyosis on social media, you'll find these beautiful people.

You'll read a seven year old's matter of fact story - that he wishes someone would invent a suit to keep him cool. You'll see the beautiful sisters showcased by their proud Lioness grandmawmie. A baby, not yet 18 months old, will make you melt. Two friends show their strong bond. You'll see my Dad who, until the blog project, never talked to me about the difficult time he had as a young father to me. You'll read about a woman who loves to dance because it means she's close to another's body. You'll meet a couple who converted gawking into tolerance. You'll see a woman who at 30 years of age, came out about her Ichthyosis and tells me she is so happy for doing so! And you'll see a beautiful young lady who forgets about her Ichthyosis and rocks a ladybird costume.

You'll see what Ichthyosis means to them but also lives well lived. You'll see growth and strength and humour. You'll see wisdom and knowledge that surpasses their years. You'll see hope.

I handed over my blog to 34 courageous (mostly) strangers in May. The month was filled with beautiful stories and pictures. The content became such a niche topic - and sadly, as the screenshots above show, not a universally respected topic. But people came.

You came.

You read, commented and shared. You cried and smiled. You learned and empathised. You were moved and wanted more. You showed great interest and respect. I have had over 93,000 hits on my blog throughout May! So many people a little more educated about Ichthyosis, and so many people feeling a little less alone with their Ichthyosis journey.

Thank you.

A big thank you to the contributors. They were the stars of this project. The courage shown through telling their stories is enough to start a revolution. Each story moved me, some to tears, and I feel like I got to know the contributors personally through this project. And I LOVED how communities have formed - parents getting in touch across the seas. It's been amazing.

I'll be opening up my blog for guest posts about Ichthyosis beyond May. Contact me if you want to submit your story (or drop me a line via Facebook or Twitter). And of course, I'll be continuing to write about Ichthyosis here as I've done previously, so if you've found me through this project, I do hope you'll stick around.

I gave my first university lecture to Melbourne University medical students this past Monday. It was a genetics class, and the geneticist I see at the hospital was lecturing with me. I know very little about genetics. But I could tell the students that people sharing stories about their genetic illnesses and disabilities helps other people share their stories. And the Ichthyosis Awareness Month blog project is an embodiment of that.

Here are some of the amazing comments we received in May. Just wow.

Thank you.

I've not always been like this. I haven't always shown confidence, nor have I always told my story.

I was a wallflower, and not just at a party. I never felt good enough to look a boy in the eye.

I used to worry about skin flaking on my shoulders, or worse - someone else's shoulder!

And I'd never have dared to wear a strapless dress.

Growing up was the worst. It seems that most people who shared their stories here this month felt that too.

I recall the pain of waking up with a bloody face in the morning because I'd scratched it during the night. The salty bath water lapping at the abrasions on my feet made me scream.

The goats milk, grape juice and only chocolate once a month on a Saturday was probably for the best, but it was a special diet and I didn't want to be any more different.

I longed for thick cascading hair and a wind machine to blow it. My scalp was patchy and bloody, and an undercut only looked good on the roughest boy in my class back in 1994 - not on a meek and scrawny, red 15 year old girl.

I just wanted someone at school to be brave enough to touch me.

I didn't want to be called Skinner or Redlight, or Snarly when I lashed out at the bullies. I dreaded the day that someone else would say they didn't want to sit with me or be my friend anymore. I wanted to be permanently in hospital because people were nicer there, and they understood me. I didn't want to be me.

I can't remember the exact moment when I knew that everything was going to be ok. I think it was somewhere in early 2000 when I found myself surrounded by a group of friends at university. A group! I'd never had a group of friends before. I found myself going to their houses between class to watch daytime TV and talk about stuff people in their late teens and early 20s do, and to the pub on Wednesday nights. I wore low cut tops and cool sneakers and drank lolly water vodkas and boys kissed me. They kissed me! And had another group of friends at the department store I worked at - we went to different pubs on the weekends. I'd work and I'd study and I'd take trips away. I was leading a normal life! By the time I left for Melbourne I had over 50 friends come to my 21st birthday party! Things were ok. And now life is better than I could ever imagine.

I came to identify with having a chronic illness in my mid 20s. Identifying with having a chronic illness made me feel part of a community. I can be both normal and different, and that's ok. I realised that I was making a difference through just being me, being the person that I once didn't want to be. By embracing my identity and telling my story, it meant that I made the decision to make the best out of a difficult situation.

People ask me if I want a cure for my Ichthyosis. No, I don't. I don't want a medical cure, at least not while I am so active. I believe the side effects will bring down my quality of life. I don't want an appearance cure so that I will be kinder on myself. Because if it means that I'm lessening the redness or scaliness of my appearance, it means that I'm letting society's perceptions of visible difference win.

I haven't always told my story, but I'm so glad I did. It makes people less uncomfortable about an often confronting topic and appearance.

Thank you for being a part of the Ichthyosis Awareness Month blog project. I am so proud of it. And I've learnt as much as you.

(The final three photos in this post were taken by Ulyana for the True Beauty Project.)

30 May 2013

I've followed Brenna's story since she was born in December 2011. I remember writing to her parents, via their blog, that things will be ok. Life for Brenna and her family will be their own kind of normal, and while Brenna's Ichthyosis may stop her from doing certain things, I know she will have a great life. She's got a loving family and so many supporters around the world cheering for her. She's making people think differently about visible difference already, at 17 months old.

Brenna's progress has been amazing - her smile makes the world a brighter place. Brenna's Mum, Courtney, writes about feeling empowered by her daughter. You can read Courtney's blog here.

"It happened without me even realizing it. Something that I wished for, hoped for, cried over since the day our daughter Brenna was born in December 2011.

It was a relaxing winter afternoon as I sat with Brenna and her three-year-old brother Connor in our living room, playing with toys and pulling out books to read, and it dawned on me: our lives were finally “normal.”

Fifteen months after Brenna was born with Harlequin Ichthyosis, her severe skin condition had finally become normal to me. Multiple coats of Aquaphor each day, bleach baths, nutritional concerns/working her feeding pump, her tiny stature with shortened fingers that don’t extend completely open, and tough, reddish, flaky skin…in my eyes, there was nothing unusual about any of this.

When my husband Evan and I found out that we were expecting a little girl, we envisioned what we then considered the perfect family: one boy, one girl…two little blond-headed kids running around, playing sports and exceling in the classroom. Evan was in a thriving banking career, and I was running a successful photography studio with big dreams. We might as well have thrown a perfectly manicured lawn and white picket fence in there.

With Brenna’s birth, our white picket fence was destroyed. We were devastated to see our daughter in obvious pain, with thick plaques of skin tightly covering her body and deep, angry fissures in between. We wondered what kind of life she would have, if she even lived at all. And we wondered and worried what our lives would be like too.

Brenna’s first year of life was hard. She battled several skin infections and endured four hospitalizations due to dehydration and staph. We had to make the very difficult decision to have a g-tube placed in her stomach when she couldn’t keep up nutritionally with the calories that her body demands as it over-produces skin, and there have been many more downs than ups when it comes to her diet and consumption. And of course, the general skin care is constant and can be overwhelming at times.

And while Brenna’s healthcare has been difficult, coping with my feelings has been a struggle too. From the beginning, I have loved and accepted Brenna completely as she is, and that will never change. But there is a lot of loss that comes with such a drastic, life-altering event as having a child with a severe health condition. Loss of the things we won’t get to do as a family that I had always dreamed we would. Loss of the things that Brenna won’t get to do or be that I had hoped she would. And, at least right now, the loss of some personal and professional goals and dreams that I had before she arrived into our lives.

But in this journey so far, I’ve learned something: life doesn’t have to be perfect to be wonderful.

Sure, not many people would be envious of the Aquaphor stains all over our living room pillows or the fact that we’re on a first-name basis with Brenna’s feeding pump (George, by the way.) But our children are happy. They are safe. And there is more pure, unconditional love in our house than they can even begin to understand. Who needs a white picket fence when you have all that?

Somewhere along the line, early on, I began to feel empowered and inspired by Brenna. She has helped me to realize so much about myself, about acceptance and respect, and about outward appearances. I firmly believe that ignorance is not, in fact, bliss…and that to eliminate ignorance will aid in eliminating criticism and cruelty toward those who are different. So my new mission that began unknowingly the day Brenna was born is to educate and raise awareness, so that Brenna and all people like her, who look different, act different or feel different, are accepted for who they are. I have found myself an advocate – an advocate for Brenna’s health care every day, but also an advocate for appreciation of differences in us all.

There is no real “normal”…there is only normal as we perceive it. And I hope that more and more people will perceive “different” as “normal” in their lives, just as I do in my life now, thanks to my beautiful Brenna."

29 May 2013

Something that has struck me with this Ichthyosis Awareness Month blog project is the 'coming of age' realisations that people have experienced. They may not have always accepted their Ichthyosis and visibly different appearances (and that's ok), but there comes a point where they make a decision of self acceptance. Larisa writes "I finally stopped wasting my time trying to fix what I was genetically given." She has made a conscious choice to be positive about her Netherton's Syndrome - and this attitude and perspective is admirable. Larisa used to blog and I'm hoping this piece of writing is the start of a rekindling. Her photos exude confidence. Her words are pretty amazing too.

"Denial. You wouldn’t think denial could be so much a part of my life with the very noticeable skin disease with a name I still don’t even like saying—Ichthyosis. It just sounds icky? Many people probably think it is. Throughout my life I have always ignored the obvious, that something was different about me in comparison to my parents, younger brother, and peers. It was hard to not always think “why me?” and that life wasn’t fair. Honestly, I still don’t think it is. But I do think I wouldn’t have been given this disease if I couldn’t handle it. I know many people wouldn’t be able to, so the fact that I can is an accomplishment in itself. I have always just wanted to be labeled “normal” instead of “unique” and I can definitely go the rest of my life without hearing “well, you’re still pretty.” But these comments most people don’t receive have helped me become a stronger person. I have been years beyond my maturity ever since I can remember. I have overcome obstacles nobody will even have the chance to overcome. But I have also met many people through my story. It’s a conversation starter. People want to know why I am not acting like I’m in pain, why I have a smile on my face, why I have enough confidence to be openly sarcastic. People probably think I should be defeated. Maybe because they would be?

Half the time I don’t even remember I have Ichthyosis. I don’t think it comes into play for me until someone brings it up, or because I have become discriminated against in some way. Honestly, I don’t really bring it up myself. I feel like I shouldn’t have to. I don’t think it defines me. I think it defines other people’s perceptions. With this disease, you become a real life exhibit for eager doctors. Doctors who pretend like observing you will lead to a cure, doctors who come in groups of 40 and poke and prod you to pass residency. After years of believing them, I finally stopped wasting my time trying to fix what I was genetically given. I now choose to live for normal goals. Passing classes, getting a job I love, finding friends who make me a better person. Things that matter. Ichthyosis to me just doesn’t. Not anymore.

Years ago, my mom forced me to go to a camp for kids with skin diseases. Being in denial, I battled with her decision to make me attend, but after that experience I realized I didn’t need to be in denial so much. Those people embraced their differences. They made lifelong friends over it! They had opportunities only possible for people like us. That experience was so rewarding and changed my outlook on life forever. Some of those children (who I later became a counselor for) had the most amazing spirits under the most extreme situations. Some of them literally had to plan every activity in their day around their disease and yet there I was denying mine. I’ll admit, it is much easier to talk about this to my friends from camp than anyone else. I guess I just assume nobody will understand. I don’t want to be categorized in the genre of “disease.” I am more than that. But I think most people let their flaws define them. Whether it is being overweight, being short, being unathletic… it’s amazing to me how much these matters affect a person’s every day life. I truly believe having Ichthyosis has made me not plan my life around what I’m afraid of. Instead of thinking a job won’t hire me because of my disease, I go into it with optimism.

It’s funny how something originally giving you low self-esteem can become the reason to have confidence later on. I can’t explain it really, but I know in a sense I view life with a different perspective. I am able to be proud of my accomplishments because I know I overcame the possibility of discrimination. When I realize how much Ichthyosis has helped me grow as a person, it’s hard not to be a little grateful for it. There is always going to be something you don’t like about yourself. If it weren’t this disease, it would be something else you wish you could change. But that’s life. And this is something we are forced to overcome because if we didn’t, we would be letting Ichthyosis define us instead of us defining Ichthyosis. And that is exactly what it wants from us."

28 May 2013

Dianna was so eager to share her story when she read about Jaime that she wrote to me asking me how she could do so too! She shares a few treatment tips in this post, but as usual, I recommend asking your doctor before you try anything new. Thanks for getting in touch, beautiful Dianna! We have shared lots of common experiences, including discovering NYC restaurants!

"As I sit here trying to put into words exactly what life has been like for me it’s difficult to fully express it all in a few words I guess I can start from the beginning. My name is Dianna Jimenez I am 31 years old, I live in New York City and my family is from the Dominican Republic. I was born 3 months premature and was diagnosed with Netherton's Syndrome early in my infancy in 1982. Netherton's Syndrome is a rare genetic skin disorder that forms part of the Icthyosis skin disorder family Netherton's syndrome affects every aspect of a person's skin, hair and auto immune development.

When I was born not much was known about the disorder. I spent my first month of life in an incubator and it was not certain if I would survive. Netherton's syndrome can be very painful because the skin sheds extremely fast without giving the new skin time to fully develop this can cause a lot of infections and fevers. Growing up and today I have to be careful in the winter to cover up and in the summer not be in the sun too much.

As a child I was hospitalized more times than I can count and seen more doctors than I possibly remember My toughest years were middle school because I did not understand what was going on with my body, I still did not know how to take care of myself and became very depressed. I became a victim of bullying and had very difficult time coping.

One thing that has helped me was a deep need to persevere no matter how difficult life seemed. I have a strong belief in God. I had this deep urge to move forward that has kept me alive and thriving. Having this disorder has helped me see the beauty in the most unlikely places, it has helped me gain sincere and amazing friends and has taught me to admire my family for helping me learn self acceptance and experience unconditional love. I graduated from college in 2004 with a BA in Psychology and 2008 received a Masters in Counseling. For fun I like to travel, read, and discover new restaurants in NYC.

Today life is not completely a walk in the park but it has gotten much better. Lately I have been using a new lotion called Renew, it has been helpful but I change what I use often. I bathe twice a day to help with skin buildup, I try to use mild soaps and at times use clorox bleach in the water. One part that has been difficult to get under control is allergies and itch. I use the medications Atrax and Doxipin both of which cause drowsiness but they are helpful. I started experimenting with makeup and learning what works for me and what does not.

This is just a little bit of my story, I think I can write a book, but I hope this small amount can help someone else persevere through their personal difficult time, if I can do it so can you! :)"

Bailey's Mum, Tracie, has been following the Ichthyosis Awareness Month blog project. We didn't know eachother until May 2013. I noticed that Bailey was sharing her story about living with Ichthyosis on Facebook, and upon reading it, I asked Tracie if I could share it here. It was too powerful not to share. Bailey has been through some incredibly difficult times being isolated at primary school. But her journey to self confidence through her family, friends, education network, her faith and on the stage is a beautiful one. Bailey's story shows that it really does take a village. Thanks for your story Bailey, you've won a gold star for the longest post of the project!

"I have a rare skin disorder called Lamellar Ichthyosis and May is the awareness month for it. I thought I'd share my story in three parts: the beginning, the younger years, and today. So let's start at the very beginning, a very good place to start...

Part one

Sunday, June 15, 1986.

Three weeks early.

My Mom goes into labor after her brother convinced her to dance at a wedding reception.

(Maybe that's where my love of dance comes from!)

On the way to the hospital my Mom had a feeling something was going to be wrong with me. My Gramma thought she was saying that because she watched a tv show that week where one of the characters had a baby with something wrong. Looking back now, my Mom sees it as God preparing her.

At 1:37 in the afternoon on Father's Day, little Bailey Rae Jones came into the world at 6 pounds and 6 1/2 ounces, 19 inches long. My Mom knew from Gramma's face that something was wrong. The doctor looked in a medical journal and found out I had ichthyosis. At 20 minutes old, I was life-flighted to the Dubois NICU. My Mom only got to stick her finger in the incubator before they flew me out. In Dubois the doctor confirmed that I had ichthyosis. I was born with a collodion membrane which was an extra layer of skin with fluid underneath. My Gramma always told me I looked like a little sausage! haha My Mom finally got to hold me when I was two days old. My Gramma had to wait until I was discharged from the hospital at two weeks old!

I came home to my Papa, my godparents, and my dog. Everyone's life as they knew it was going to change.

Part two

Lamellar Ichthyosis is a rare skin disorder that affects one in 200,000 people. It is one of the more common types of ichthyosis (there are at least 27 others). It is caused by a recessive gene carried by both parents. My body's manufacturing of skin cells is off which causes the build up of scales all over my body.

Here are some physical facts about my skin disorder:

I have scales that cover my entire body.

I cannot sweat or rather cannot sweat very well. The scales block my sweat glands.

I cannot sweat so overheating is a very real problem for me. A fever is life-threatening.

I have ectropion which is the skin around my eyes being so tight it causes my eyelids to turn inside out.

I cannot close my eyes all the way because of the ectropion. It's the thing I'm most self-conscious about.

I have never been bit my a mosquito. They can't get through my skin.

I have bald spots on my head because of the scales.

I have dry eyes and must use ointment and eye drops each day.

I had to have ear surgery once. Couldn't hear a clock tick because the scales built up badly in my ears.

I heal very quickly though I am very susceptible to infections.

I don't have to shave very often because the scales prevent my hair from growing too fast.

I don't have natural oils in my skin so it took me years to be able to do a thing as simple as turning a doorknob.

I have dry skin which cracks. Sometimes these cracks are 1/4 inch deep.

I have to put lotion on throughout the day.

I have a very high metabolism since my body is constantly working at growing new skin cells.

I usually have to shower to keep my skin moist longer.

I shed a lot of skin every day. We call it "angel dust".

There is no cure.

Here are some physical facts about other types of ichthyosis:

Some are much better than mine. They aren't as noticeable because it only appears on parts of their body.

Some are far worse than mine. Their skin blisters and tears at the slightest touch. They must be wrapped in bandages all the time.

Some have such tight skin that it makes it hard to walk or deforms fingers and toes.

Some have very little hair because of the scaling.

Some have poorly developed bones and have problems with their internal organs.

Some have extremely red skin.

Some have problems with teeth, nails, poor vision.

Some have difficulty growing because of their high calorie intake needed daily to keep up with the work their body is doing.

Some types aren't expected to live longer than a few days.

But far worse than any physical implications is the emotional turmoil you face every day. Here's my story:

Growing up with a skin disorder was not easy. In preschool, kids were hesitant to be my friend. In Kindergarten, parents called our principal asking to take their kids out of my class. People wouldn't touch things I touched. I was called "Scaly Bailey". Everywhere I went I was stared at like I was some sort of crazy creature at a Circus Side Show. Growing up in a small town helped because once we started teaching people about my skin most became supportive and word quickly spread. I finally had a girl step up and become my friend...others quickly followed her lead. I became one of the coolest kids in 2nd grade when I had a Cool-Suit Vest to keep my body temperature cool during recess and gym. But it was still difficult. I knew from a very young age that I was different. The older I got I began to notice advertisements in the media for smooth skin. It made me upset because I would never have that. It even bothered me that I couldn't catch a guy's attention...but why would I with the skin I was in? My Mom & Gramma always told me that God doesn't make mistakes, that He loves me just the way I am but I didn't believe them. I prayed for my skin to be healed but every day I woke up still trapped in these scales. I didn't want to be different. I didn't choose to be different. I became extremely insecure and shy. I felt worthless and ugly. My favorite movie was Beauty & the Beast (and still is) because I can relate so much to the Beast and what he was going through.

One day in Sunday School, my teacher told us that Jesus wanted to be our friend. I remember going home that night, lying in my bed and thinking that over. It wasn't easy for me to make friends. But what if it was true? What if Jesus, the King of all the universe, really did want to be my friend? That night I asked Jesus into my life. I finally chose for myself to begin to believe all that He says about me. "You are God's masterpiece." (Eph. 2:10) "Man looks at the outward appearance but the Lord looks at the heart." (1 Sam. 16:7) "You created my inmost being. You knit me together in my mother's womb." (Psa. 139:13) "The King is captivated by your beauty." (Psa. 45:11) It was after I started to believe these things that I gained confidence with the skin I'm in. Sure, I still have days where I can be insecure. I still have days where I hate my skin. I still have days where I wonder what it would be like to roll out of bed, throw on some clothes and leave for the day without having to go through the whole lotion bit. But I've come to realize that every morning when I wake up, it's a choice I have to make. Will I believe what the media and people around me say about beauty? Or will I believe what God says about beauty?

I want to leave you with my life verse:

"I praise you because I am fearfully and wonderfully made. Your works are wonderful. I know that full well."

Psalm 139:14

Part three

I don't even know where to begin this one.

"'Cause what if your blessings come through raindrops?

What if your healing comes through tears?

What if a thousand sleepless nights are what it takes to know You're near?

What if trials of this life are Your mercies in disguise?

We doubt Your goodness. We doubt Your love

As if every promise from Your Word is not enough.

What if trials of this life

The rain, the storms, the hardest nights

Are Your mercies in disguise?"

This seems to sum it up for me. What started out as the greatest challenge my family would face became one of the greatest blessings! So today, I want to share the blessings, my blessings from living with ichthyosis.

Family

This is where it all starts. This is where your life lessons are learned. This is where your support system comes from. And I truly could not have asked for a better family. From my Mom who never treated me like I was different from other kids to my grandparents who raised me so my Mom could finish college. To my aunt and uncles who helped with multiple baths a day, putting lotion on, picking loose scales and cooling me down when I was overheated. To my cousins who have loved me from the start. To my stepdad who has always loved me like his own. To my step family who welcomed me with open arms. To my cousin Caitlin (my "sister by heart" - pictured below) who always wanted to be around me and was such a close friend in my most fragile years. Without my family, I would not be the confident woman I am today. They started the path I'm on. I know they have my back. I know they support me. I know they love me, skin and all. Without them, the rest of these blessings might have never come.

Small Town

Sometimes living in a small town can be a curse, sometimes it can be a blessing. The older I get the more blessings I see. The biggest being the overwhelming support I've received from most people in this town. People know me. Maybe to start out it was because of my skin. But today they know me as "so-and-so's relative" or "the dancer" or "the musician" or "the one who is always in the newspapers." They don't see my skin anymore. They have rallied behind me so many times throughout my life. When I was only a year old, a local man created a movie about me and my ichthyosis and aired it on the local television networks! My pre-school teacher, was an incredible first influence outside of my family. My elementary school principal, refused to let parents sway him to take me out of their kids' classes. I wouldn't change where I grew up for anything. It has shaped me in so many ways.

Friends

Everyone has friends. Some have many. Some only have a few very close friends. One thing I've learned with ichthyosis is that it can be challenging to make friends but when you do they are so valuable because they see you for who you are, not what you look like. I am forever grateful to Julie, my first friend who I am still close to today. Her bravery in stepping forward to befriend me showed other kids that they could do the same. And honestly, I don't think she ever cared that I was different or if she really even noticed too much. And God has continued to give me amazing friendships throughout my life.

The Stage

Maybe it's because of my own insecurities that I was searching for a place where I could belong. I found it onstage. There I could be myself. People saw me for my talent rather than my skin. And I've seen this as a reality in many others with ichthyosis. Music, theatre and dancing have given me confidence in myself and in my body. And some of the most influential people in my life were found in these worlds. April taught me not only dance but how to challenge myself and how to become a good role model. My dance family has loved me every step along the way and made me feel cherished. And every year this family grows. And their support by being involved in so many benefit concerts for ichthyosis have meant the world to me. My students have challenged me to be a better person and to share my story with them. I was given a home in theatre and encouraged me to never give up my dreams. All of these people have showed me which path I want to take in life. And the stage is where I learned to shine!

Church

The First Baptist Church is the first place that I can recall walking into and not being stared at. It's where I found Jesus. It's where I learned what God has to say about my beauty. It has given me an extended family. I know these people will always be there for me no matter where I am.

College

College was a new experience for me like it is for so many others. I had the usual fears on top of whether or not people would accept me because of my skin. In a way, it was kind of like starting all over again. But once again people welcomed me. President Black who not only helped carry my stuff into my dorm that first day but was crucial in making arrangements for things I needed. I had mother away from home, and also a spiritual father figure in my life and was there for me through many trying times. The entire music department who believed in me. At college, I grew a lot as a person and became ever more confident in the person God meant for me to be.

College Roommate

I don't know of a single college student who isn't worried about who their roommate is going to be! It is probably the singlemost biggest fear we have but God blessed me beyond belief with Natalie! She lived with me for four years, we're the best of friends, her family has welcomed me as one of their own, and I was her maid of honor at her wedding. She wasn't grossed out that my skin shed or that my eyes don't close all the way when I sleep. She was there as a shoulder to cry on when people were rude about my skin. She didn't mind that it sometimes took me longer to get ready because of showering and having to put on lotion. Sometimes she would even put lotion on my back since it's hard for me to reach. I truly don't know what I would do without her! She has become my sister, my absolute best friend.

Love

I know I've always struggled with the question, "who will love me as I am?" When a guy could have any girl he wanted, why would he pick someone with a skin disorder? Well, my life was forever changed when I met Elijah. He was the first man to ever admit he liked me as more than a friend. He was my first boyfriend, my first kiss. I still remember the night he told me he liked me. He grabbed my hand and told me I was beautiful. It was all I could do to hold back the tears. Those were words I always wanted to hear from a guy but was afraid I never would. He treated me like a princess. He told me he loved my skin, loved that I was different. We had a wonderful relationship we had. Even though we are no longer together, I still think the world of him. He showed me that a great and godly man could love me and find me attractive. And I know he changed my life forever by loving me.

Moments

I think one of the biggest blessings in having ichthyosis is the "moments". Things that are a regular occurrence in everyone's life but are a bigger deal when you grow up with an obvious physical disability. Or things that might not be a normal occurrence in one's life, but is made even sweeter because of the fact you are different. My first friend. My first close guy friend. My first prom date. Winning Homecoming Queen, when my entire town and the opposing team cheered. My first college roommate. My first love, my first boyfriend, my first kiss.

Experiences

Having ichthyosis has given me so many cool experiences! I've met the most amazing people at the National Conferences with F.I.R.S.T. People who understand exactly what I'm going through. I had a great penpal in Laura Ashton as a young child...my first friend with ichthyosis. I've attended Camp Horizon, a camp for kids with skin disorders. I've been featured in Ladies Home Journal. I've been part of a DVD that F.I.R.S.T. made for teens with ichthyosis. In a modeling contest, I was able to share my story with hundreds of people. I got a chance to Make-A-Wish and through that was able to dance on Broadway through private lessons with the dance captain of Beauty & the Beast (Remember, my favorite movie of all time? It couldn't have been more perfect!) I've had three dance students with different skin conditions that I've been able to inspire. And through my Princess Tea ministry, I've been able to teach young girls the truth about beauty...that God finds them beautiful just the way they are. And at the last national conference, I began to realize the countless lives I've inspired. None of this is of my own doing. I'm just being who God created me to be.

I know that I would not be the kindhearted, compassionate soul I am today without my skin disorder. It doesn't define who I am, but it has shaped me in so many ways. I have such a heart for orphans, for those who are on the outside looking in, for the bullied, for the poor. I know what it's like to be different and how lonely that can be. I want to reach out and befriend those people, like Julie did for me so many years ago. Here are my friends with Ichthyosis.

Healing

In the end, after years of praying, I still have ichthyosis. But I am healed. No, not physically but emotionally which is far better I think. I went from that shy insecure little girl to a confident young woman. I wouldn't change any of my experiences because it has brought me to where I am. God is gracious and has used all my hardships as lessons to point me in the right direction. And He continually gives me opportunities to share my story, to be a blessing to others. I am completely content in my skin. Most days I forget I even have ichthyosis.

Courtney is an Australian mum to Harry, a little boy with Ichthyosis. Harry loves ball sports and has a gorgeous smile. Courtney worries what the future will hold for Harry, and I have told her that while life with Ichthyosis is hard, it does get better. Harry is pictured below with Courtney and his twin sister.

"Harry is two and a half, he has EHK/EI Ichthyosis. It turned my world upside-down... I had wanted to be a mother for years and finally I was not just pregnant, but carrying twins. It was a perfect pregnancy, the scans and tests came back spot-on for healthy babies. In the end though, after twelve hours of a breech-breech labour that wasn't progressing, I had a c-section and was told "you have a daughter!" She was checked over and put on my chest, perfect. Next I was shown enough of my son to know he was a boy then he was whisked away. A hazy voice told me that there was something wrong and that he needed extra attention. The next words I heard floating around the theatre were "glad wrap"... Why were they glad wrapping my baby?

The longest hour or two later I was finally allowed up to NICU (neonatal intensive care unit) where (I'm told) I asked "appropriate" questions. I didn't remember going there that night until I saw photos of it a couple of weeks later.

My son looked like he had been boiled (and it took a long time, and a visit to the genetic counsellor, to stop blaming myself for taking such hot showers during pregnancy... if only it was that simple!); like a huge blister had covered his torso and had popped, leaving red raw fragile skin over a lot of his body; with other areas seemingly covered in a thin membrane or extra layer. I later read that babies with EHK/EI have been described as "enfant brûlée", from the French for "burned child", quite a fitting description.

Over the four weeks he stayed in NICU we started to learn to care for his skin, but in choosing to avoid the internet for that time, our knowledge remained limited. Harry was a couple of months old when, at a dermatology appointment, we were told he had Lamellar ichthyosis ... the same appointment at which he almost managed to wee on the dermatology registrar. The same registrar who had removed his newly applied head to toe dressings back in NICU (a very long and distressing process to apply) and then just left him like that after an unannounced examination - Go Harry, good try!

After changing hospitals and finding a dermatologist we preferred we discovered that he actually has Epidermolytic ichthyosis (EI), previously (and still to us) known as EHK or Epidermolytic hyperkeratosis. What that really means is that his skin is fragile and prone to blistering but reproduces significantly faster than it can shed (possibly up to 200x faster than normal), which results in thick, hard scales.

He spends a lot of time in the bath to soften and remove excess skin and we apply acid-based cream to exfoliate and moisturise (no, the one we use doesn't sting). It doesn't sound too bad, but try and explain cause and effect to a two year old ... if you have your five minutes of cream, you will feel better all day. When half an hour of crying twice a day happens most days, when before he even gets in the bath he begs not to have creams, no matter how you approach it, your heart aches. Harry's twin finds it distressing to see him so upset too. So I compensate, I try to make them the most kissed and cuddled, most fiercely protected babies in the world; but they also have occasional days when they are the ones to say, "Stop crying Mama, you ok, you be happy now".

I admit to a certain level of vanity, and am proud of how good looking my children are. I can’t bear that some people only see Harry's ichthyosis and not how beautiful he is and won't ever know what a sweetheart he is. It is a strange experience to see the "normal" reactions and comments that people make towards his twin, compared to the hesitancy as people decide which approach to take when meeting Harry ... say nothing, pity, empathy, assumption, curiosity, "helpful advice."

One of my biggest fears is school ... will they look after him? He overheats within minutes, how will a teacher keep him safe and make sure he doesn't get potentially deadly heatstroke? Of course the other fear is bullying, exclusion, seeing his gorgeous heart saddened if he is left out because of something that is no fault of his own.

We've already encountered some mean children and had some parents "subtly" remove their own kids from where he was playing; but we have also met some brave children who visibly brace themselves and allow him to hold their hand or hug them even though they find it confronting. And some really sweet children who take him under their wing and encourage and play with him, concerned only that they might hurt him. But what happens when he isn't little and cute anymore? Well, he is intelligent and if I manage to do my job as a parent and foster his compassion, his empathy, keep his incredible interest and enthusiasm alive, as well as help him develop skills and interests that will help him make friends, then I can only hope he'll be OK.

Harry's dad played a lot of sport growing up and always talked about coaching our kids and which sports he hoped they might get involved in. Harry loves anything that involves a ball especially golf, cricket and soccer; as well as riding his scooter and going to kindy-gymnastics; he is a natural sportsman. What slows him down is sore skin, blisters, skin grazes/tears and of course the fact that he doesn't perspire. When it is much over 22C or he is running around for more than a couple of minutes he wears a neck cooler and we wet him down. Just recently we bought him a cooling vest that has special icepacks all around his torso, he'll get a new one every year or two as he grows. I don't know how much sport he will be able to play, but he loves it so I'm sure he'll find a way. EHK skin loves water so here's hoping he is a keen swimmer or even a surfer... at thirty-six I've just started surfing lessons, so if I can I'm sure he can!"

26 May 2013

Tonight's story is a good news one, and a very fitting event to happen during Ichthyosis Awareness Month. What a milestone in the Ichthyosis community! Her story is too good not to share.

Stephanie Turner (from Arkansas, America), who has Harlequin Ichthyosis, gave birth to a baby boy on 25 May 2013. Stephanie, aged 20, was unsure whether she was able to carry a child, but her pregnancy (although high risk) was smooth and her baby was born without Ichthyosis.

She and her husband Curt have named their baby William Mason Drake Turner, and he will affectionately be known as Little Will. William weighed 3.4 kilos (7 pound 10 ounces for you non-metric folk).

Stephanie is the first known case of a woman affected with Harlequin Ichthyosis to give birth. It has been exciting to see her progress online. I've seen some photos of her baby on Facebook and he's beautiful.

Stephanie blogs here and she was also recently featured on a national news story in America. I love how she articulates her story, and I love the love she has for her husband.

You can send your wishes to Stephanie, Curt and Little Will well on Twitter and Facebook.

Stephanie has the most beautiful smile, and I'm looking forward to seeing some beautiful smiley family photos soon! Congratulations Stephanie and Curt! Rest up and cherish those precious moments.

(Note - pictures sourced from Stephanie's blog and Twitter.)

Edit: Just chatted to Steph and she's said I can share a pic with you all! Isn't William beautiful and Steph just radiant?!

Tune in!

Follow me

Copyright + disclaimer

The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.